Life with ET: I am the person flying through the... - MPN Voice

MPN Voice

10,438 members14,388 posts

Life with ET

MJL1977 profile image
12 Replies

I am the person flying through the air.

At 39 I discovered I had ET (CALR). I also started Brazilian Jiu Jitsu. Almost 4 years later I still have ET and I take 2 pills of Hydroxyurea 5 days per week.

Today I received my purple belt. The test was two hours of nonstop movement and grappling. My point; you might not be able to beat this Cancer but don’t let it beat you. Get angry, find a physical activity, and focus on that. Don’t let the disease win!

Written by
MJL1977 profile image
MJL1977
To view profiles and participate in discussions please or .
Read more about...
12 Replies
piggie50 profile image
piggie50

What a lovely positive post to read.

Thank you. 😊

clubdino profile image
clubdino

Great picture! 😅

socrates_8 profile image
socrates_8

Hey there MJL1977... ;-)

Belated Christmas wishes & for the New Year 2020...

Great Post by the way... And I could not agree more... Irrespective of our age we can all be much healthier an improve our longevity with help from a good anti-inflammatory diet of unprocessed plant-based foods, fruits, and seafood is much better than meat, in my view...

Add an exercise regime that one can be passionate about, and many find it much easier to maintain a new dietary regime too... The longer we can keep our muscles toned and functional, the longer they will aid in supporting us into our twilight adventures, in my view...

I am on a Fundraising mission where I am hoping to Cycle 20,000kms in Under 200 Days, by cycling around Australia... This year, in training, I have now cycled 11,200kms in preparation for my journey...

I am Post ET/MF, CALR+ Type 2, w/ ASXL1+ and just to round it all off for the moment, I also have Type 1 Von Willebrands Sydnrome (VWS). Been on Ruxolitinib now for just over Three (3) years, and now trialling Low-dose Methotrexate (MTX) to manage the reduction of my high platelet regime, and enjoying a measure of success currently...

Stay strong and healthy in 2020 MJL1977...

Best wishes

Steven

(Sydney)

MPN-MATE.COM

MJL1977 profile image
MJL1977 in reply to socrates_8

Good luck on achieving your cycling goals and with MTX. I’m not familiar with that medicine, I’ll have to research it.

hunter5582 profile image
hunter5582

Congratulations on your purple belt. Could not agree more about the importance of physical activity and overall health. I started the practice of Qigong about 6 months ago and it has made a big difference in my physical health and stress management. My sifu (teacher) is also a Gung-Fu instructor and I will likely add that as well.

Love your attitude and could not agree more.

Wyebird profile image
Wyebird

I’m thrilled. Congratulations. I do hope life continues to be positive for you.

RobPV profile image
RobPV

American I assume.

MJL1977 profile image
MJL1977 in reply to RobPV

Yes

Cja1956 profile image
Cja1956

Good job! We always like to get encouraging news like this. Keep it going!

Aruntez profile image
Aruntez

Hii good message it's very helpful even my wife is Et calr and on hydab 2*500mg Along with asprin.

Did your doctor prescribed you to take asprin along with hydab.

Dovme profile image
Dovme

Great post especially at these times

Important to remain positive

katiewalsh profile image
katiewalsh

Hi, congrats on your belt. I wonder if you’ve discussed your passion with your MPN specialist. I don’t want to crush your spirit but my specialist says I can’t engage in activities that result in hard pressure on my body. Even a deep tissue massage is too much. He says it could result in a life threatening bleed or clot. And he’s extremely good & highly respected. You might want to ask your specialist to be sure it’s safe for you. Then you can decide if it’s a risk you want to take. Congrats, again! Katie

You may also like...

Et

Diagnosed in January with ET Put on hydra and hydroxy. Don’t know if it’s the aspirin hydroxy or...

ET

negative or having other diagnoses one I remember is CALR. Are these diagnosed by BMB ? I feel I...

ET

ET

ET

between \\"oh a growth that was cancer\\" and \\" argh I have lung cancer\\".